North West, North Wales and Isle of Man Congenital Heart Network
Advice for patients and families affected by congenital heart disease and children with other heart conditions
Updated Consensus Statement 6th July 2022
We understand that patients and families may continue to be anxious about coronavirus (COVID-19). The COVID-19 pandemic affected a large number of people over the past few years. There remains little evidence relating to patients with congenital heart disease (CHD) and the risks of infection with this new virus. So far, it appears that most children with CHD are unlikely to be at any greater risk of severe illness with COVID-19 than those in the general population. Evidence from around the world suggests the disease is much milder in children and, in fact, some may show no significant symptoms at all. The risk of becoming very unwell due to coronavirus remains very low.
Everyone should continue to take steps to help protect themselves and others
The Government in England has removed all remaining restrictions. However, there are still steps that you can take to help reduce the chance of you catching and spreading COVID-19.
What symptoms should I look out for?
Changes to testing for COVID-19
Free testing for COVID-19 from the NHS has ended for most people in England. If you have symptoms of COVID-19, you are no longer required to do a rapid lateral flow or PCR test. Different guidance is available for people living in Wales and The Isle of Man. Please refer to the relevant guidance below:
Who can get a free NHS COVID-19 test?
You may need to get tested if you’re due to have surgery or a procedure. Your hospital will tell you how to get a test if this is required. Contact your hospital department if you have any questions.
Alder Hey Children’s Hospital: 0151 252 5291
Royal Manchester Children’s Hospital 0161 701 0664
North West Adult Congenital Heart Helpline:
Liverpool Heart & Chest Hospital: 0151 254 3333
Other helpful advice to keep you safe
It is no longer mandatory to wear a face covering. However, it is still advisable to wear one in crowded places and on public transport. You will still need to wear one when visiting most NHS settings.
How to keep up to date with the changes where you live?
The advice is different depending on where you live. For more detailed information click on the links below:
The COVID-19 vaccines are safe and effective. They give you and your child the best protection against COVID-19. Click the links below from the NHS website to find out more information:
- Who can get a COVID-19 vaccine
- How to get a COVID-19 vaccine
- Side effects and safety
- What happens at your COVID-19 vaccination appointment
- COVID-19 vaccination for children
- COVID-19 vaccination for people with a severely weakened immune system
The British Congenital Cardiac Association (BCCA) has also produced guidance on vaccinations for children with congenital heart disease. Please click on the links below for more information:
- BCCA statement for COVID-19 vaccination in children aged 5-17 years (4th April 2022)
- BCCA advice for patients – myocarditis and pericarditis following COVID-19 vaccination in children and young people (14th September 2021)
If you have any questions related to the vaccine and whether to have it or not, please call the nurse specialists via the helplines to ensure that you receive up to date information to help you decide.
The British Congenital Cardiac Association (BCCA)
The British Congenital Cardiac Association (BCCA) have provided regular advice and guidance throughout the pandemic for patients and families affected by congenital heart disease. Please go to the BCCA website for their latest updates about COVID-19 and congenital heart disease including advice about vaccination in children with CHD.
What to do if you or your child were previously considered to be extremely vulnerable from COVID-19
You may have previously been advised to shield during the earlier stages of the pandemic. Most people are now well protected after receiving their vaccination and booster doses. Most people are therefore no longer at greater risk than the general population and you are advised to follow the same guidance as everyone else. If you have received additional guidance from your doctor then you should follow this on an individual basis.
Everyone on the previous Shielded Patient List should already have been offered a COVID-19 vaccine. If you have not yet received your first dose, please contact your GP, book your vaccination appointment on-line or call 119. If you have received your first dose, you should still ensure you take up your second dose of the vaccine. Having 2 doses should further increase your level of protection. To maintain this high level of protection you should also get a booster vaccine for COVID-19 when offered.
There remains a smaller number of people who, despite vaccination, are at higher risk of serious illness from COVID-19. This is due to a weakened immune system (immunosuppressed) or other specific medical conditions and requires enhanced protection. Such patients may be offered antibody and antiviral treatments, additional vaccinations and potentially other non-clinical interventions.
What to do if you are pregnant?
If you get COVID-19 in pregnancy, you can be extremely ill and if a mother becomes ill this is dangerous for her baby and can result in miscarriage, stillbirth or very premature delivery. Women with Congenital Heart Disease are at even higher risk if they catch COVID-19 whilst pregnant. It is therefore important that you do all you can to avoid catching it. The COVID-19 vaccine is very safe in pregnancy, significantly reduces your chance of getting the virus and helps to keep you and your baby safe. It is available to all pregnant women, but particularly important for those with Congenital Heart Disease.
Pregnant women are strongly advised therefore to get vaccinated.
If you are pregnant and you develop symptoms of COVID-19, it is important that you contact your GP, midwife, cardiac maternity team, or NHS 111.
Guidance for pregnancy and COVID-19 can be found on the NHS website. For further information and answers to questions for pregnant ladies and their families please refer to the guidance that has been published by the The Royal College of Obstetricians and Gynaecologists (RCOG)
What do you do if you or your child become increasingly unwell with symptoms of COVID-19?
Do not go to place like a GP surgery, hospital or pharmacy
Children and babies in particular will still get illnesses that can make them very unwell quickly. It’s important regardless of your age to seek medical help if you need it.
What to do if your baby or child with CHD is unwell?
- Call NHS 111 if you are worried about a baby or child under 5 years
- If your child seems very unwell, is getting worse or you think there is something seriously wrong, call 999
- Don’t delay getting help if you are worried. Trust your instincts
- Remember to mention they have an underlying heart problem
- Take any recent clinic letters with you if you are admitted to hospital
What to do if you are an ACHD patient and are unwell?
- If you are worried about your symptoms and not sure what to do, you can get help from NHS 111 online
- Call 111 if you cannot get help online
- Dial 999 in an emergency
- Remember to mention that you have an underlying heart problem
- Take any recent clinic letters with you if you are admitted to hospital
Our NHS is extremely skilled in looking after people who are very unwell and it will help them to look after you safely if they know that you or your child has an underlying heart problem . They can call the “on-call” congenital heart team for advice 24/7 via the switchboards listed below:
- Alder Hey Children’s Hospital: 0151 228 4811 (paediatrics)
- Manchester Children’s Hospital: 0161 276 1234 (paediatrics)
- Liverpool Heart and Chest Hospital : 0151 600 1616 (adults)
The NHS is able to provide urgent care for all other emergencies as normal
- For all other health information and advice, use the NHS website or check your GP surgery website
- For urgent medical help, use the NHS 111 online service. Only call 111 if you’re unable to get help online
- For life-threatening emergencies, call 999 for an ambulance
- If you think that the symptoms may be due to you or your child’s congenital heart problem make sure you are clear about this when you speak to a health professional
- Ask staff to liaise with the congenital heart team for advice who are on call 24/7. Particularly if they are considering putting you in a ward with other people who may be ‘breathless’ because of COVID-19
- If you need non-urgent advice regarding you or your child’s congenital heart condition please contact your congenital heart helpline to speak to one of the Nurse Specialists
Information for patients with heart rhythm problems
Those patients with Brugada Syndrome or Long QT Syndrome (Type 3) will be at increased risk from COVID-19. This is because fever can induce dangerous rhythms. There is no evidence that this is any different to the risk caused by other illnesses that result in a high temperature.
There appears to be no increased risk for all other patients with rhythm problems including:
- Long QT Syndrome
- Patients with congenital heart block
- Patients with a permanent pacemaker who have a normal heart
COVID-19 and Pulmonary Hypertension
If you are taking medication that needs a regular blood test then these should have been re-instated from the beginning of August 2020. For further advice relating to patients with Pulmonary Hypertension and COVID-19 please visit the PAH-uk website
Coming to Out-patient Clinic
DO NOT come to Out-patient Clinic if you or your child have symptoms of COVID-19 or have been in contact with anyone with symptoms
Hospitals have restored most of the routine clinic activity that was initially delayed or cancelled because of the pandemic. Both paediatric and adult services are continuing to provide urgent clinics each week for patients who are unwell. Some hospitals are beginning to relax their rules about the wearing of masks etc. It is best to check with the hospital you are visiting as to what is expected by visiting their hospital website.
Here are some of the rules that may still apply:
- The number of patients in each clinic may be smaller to enable staff and patients to adhere to social distancing
- Staff are still wearing personal protective equipment in most hospital settings
- You and everyone with you may also be expected to wear a face covering when visiting some hospitals
- Equipment e.g. ECHO machine will be fully cleaned in between patients
- Children should attend with only one parent or carer and adult patients should attend alone or if they require support with a maximum of one other adult
- Special consideration and adjustments can be made if a patient with learning difficulties or special needs require more than one person to support them. Please call your helpline ahead of your appointment if you feel this may be required so we can make appropriate adjustments.
- Please call your Congenital Heart Team via the patient helpline if you have any concerns
- Please call your Congenital Heart Team if you cannot make your appointment so it can be offered to someone else
Having an Operation or Procedure
Emergency operations and catheter procedures continue to be performed as needed. Routine procedures and operations are now back up to normal levels. There is still a back log of patients especially in adult services and waiting times are still likely to be longer than normal. However this is gradually improving.
What to expect:
It is important that you or your child and the staff looking after you are kept as safe as possible. Therefore there are still safeguards in place to minimise the risk from COVID-19 infection in most hospitals.
- You or your child will be pre-admitted prior to your operation or procedure as normal
- Some of your appointments may be via a virtual platform called “Attend Anywhere”. You will receive specific instructions about how to use this technology.
- The Congenital Heart Nurse Specialist will give you specific advice as to what will happen to you or your child and will discuss any special measures that are needed for you
This may differ slightly between the paediatric and adult hospitals but may include one or more of the following:
- You or your child may need to be swabbed for COVID-19. If you live a distance away from the hospital you can call NHS 119 to arrange to have your COVID-19 test done locally
- You may be asked to self isolate prior to your operation or procedure. The Nurse Specialist will explain if this is required and for how long this is necessary prior to being admitted
- You may need to be admitted for several days beforehand in order to be re-swabbed
Can I visit my child or family member whilst they are in hospital?
DO NOT visit anyone in hospital if you have any symptoms of coronavirus or if you have been in contact with anyone with symptoms
In order to protect patients, staff and the public, hospitals have special visiting arrangements in place. Please check visiting arrangements before you try and visit your loved one.
Please call your Congenital Heart Team via the patient help line numbers below if you have any questions about how this might affect you or your child’s care.
What if you or your child develop new symptoms related to your heart problem?
If you are concerned that you or your child has new symptoms related to your congenital heart problem please contact the Congenital Heart Team on the numbers below to discuss with a Specialist Nurse. They will make sure that patients who need to be reviewed urgently will be seen appropriately throughout the CHD Network as the pandemic continues.
How to contact the Congenital Heart Team
Alder Hey Children’s Hospital: 0151 252 5291
Royal Manchester Children’s Hospital: 0161 701 0664
North West Adult Congenital Heart helpline:
Liverpool Heart and Chest Hospital: 0151 254 3333
Frequently Asked Questions
ACE Inhibitors or angiotensin receptor II antagonists
Many patients with CHD or chronic heart failure may be on ACE inhibitors (e.g. Ramipril, captopril, lisinopril, enalapril), angiotensin receptor II antagonists (e.g. losartan, candesartan) The British Cardiac Society, British Society for Heart Failure and European Society of Cardiology Council on Hypertension have said that there is no clinical or scientific evidence to suggest that treatment with an ACE inhibitor should be discontinued because of COVID-19. Stopping these medications may cause worsening of your heart condition.
Our recommendation is that patients who are taking aspirin continue on their treatment unless advised differently by their cardiac team.
Removal of the Thymus
The thymus gland is routinely removed during some forms of cardiac surgery where the scar is at the front of the chest. There is no evidence that this constitutes an additional risk for infection.
Can COVID-19 trigger a Kawasaki like syndrome?
Most children are asymptomatic or exhibit mild symptoms from COVID-19 infection. However, a small number of children have recently been identified who develop a significant systemic inflammatory response. The Royal College of Paediatrics and Child Health have issued a statement stressing that it remains unclear whether paediatric multi-system inflammatory syndrome is caused by COVID-19 and reiterates that it has affected an extremely small number of children in the UK and throughout the world. It remains extremely unlikely that a child will become unwell with COVID-19, and it’s even more unlikely that a child will become unwell with this condition. If you have an unwell child, it probably isn’t anything to do with COVID-19 and is more likely to be something else.
The Royal College of Paediatrics and Child Health (RCPCH) has also produced a useful information and to guides to help parents know when to seek help for their child when they are unwell.
Other Useful links
MIND: Looking after your mental health and well-being:
The Faculty of Sexual & Reproductive Healthcare: Advice for women seeking contraception, abortion and other sexual and reproductive health care
Helpful Videos to Watch
COVID-19 & Anxiety – Tips on How to Manage
COVID-19 Q&A’s with ACHD Psychologists
A Special Thank You from Our ACHD Patients
Cardiac Appointments – August 2020
CHD + COVID 19 Update & Advice – August 2020
How to contact the Congenital Heart Team if you have any further questions
Alder Hey Children’s Hospital: 0151 252 5291 Royal Manchester Children’s Hospital: 0161 701 0664
North West Adult Congenital Heart Helpline
Liverpool Heart and Chest Hospital: 0151 254 3333